Wednesday, October 22, 2008

Friday, October 17, 2008

Look at these beautiful children. Reece's Rainbow has helped find many of them homes and families. Sometimes I wonder how one can give up so much time, money and resources for a cause. I understand now. There is more to life than new cars, vacations, upgraded kitchens and Disneyland passes. Heavenly Father loves each of his children- reguardless of geography, government and economics. Please help me pray that every child will find a loving home and family to care for them.

Thursday, October 16, 2008

When Scott and I were newly married we always made sure to donate or adopt a family for Christmas with the little extra cash we had. It was done anonymously, and I would stay anonymous, but today I have charity on my mind. We would find a gift for each child and make sure to send a gift card for food or money in an envelope. Sometimes we would do "the 12 days before Christmas" and leave things on a door step. We have even had the girls pick names of the tree at Toys R Us or Walmart and buy a gift for someone they didn't even know. It didn't matter... I loved serving others and wanted my children to find that love and think of others before themselves.

I remember one day during the holiday season seeing a young mother wrestling with several young children. Many baskets full with toys, electronics, clothing going to home to be wrapped for the holidays passed her by. In her basket, was milk, cereal, bread and some diapers. All of the sudden a man came out of no where and handed her a $50 bill. She looked surprised and immediately tried to give it back. He just nodded and said very quietly, "I've been waiting to give this to someone who deserves it." And then he ran off before she could say anything more.

I was so touched by this man. Who carries around $50 dollar bills? I didn't get to ask him- but I am certain he was holding it and waiting for the opportunity to share with someone else. I love the way he didn't say she was "in need" or "less fortunate".

Fast forward many years now. I have had many opportunities to hold my extra money and wait for someone in need. My husband is a frugal but very generous man. We still don't have a Wii... but if someone needed rent money, their car broke down or some other need- he would help in a heart beat.

OK- this sounds like a "we are sooooo awesome post" so I will get to the reason I wanted to talk about this. Lately, in the last several years, I have become less excited about helping others. It is really hard when you buy someone a car and they have a laptop. When you buy someone a ticket to go to an activity and they have already done it several times. It seems like so many cry poor, when they have more than us. We live way beneath our means and often go without because we know there may be a day when we need it. We have a good portion of our girls' college tuition's saved, because we don't want to have to get loans or grants.

I have realized that very few people in this country "need" anything. I'm not sure parents are teaching their children the difference between "needs" and "wants". I have become a bitter old lady who is weary of charity (other than a ride somewhere, watching kids or a hot meal). I know I shouldn't judge if anyone is in need.

Well, I think I have finally found my answer!! I have found many little ones who are in great need. Many of my on-line friends are adopting children with down syndrome internationally. Did you know that in many countries once a child with special needs turns four they are unadoptable and are sent to mental institutions? Some countries do nothing to help these children- including providing them with life saving surgeries. Although the baby houses are staffed with loving caretakers, many older children die alone, in cribs, with no one to love them or care for them.

If you are looking for a "good cause" or someone to help- PLEASE, PLEASE, PLEASE visit http://www.reecesrainbow.com/ an International Down Syndrome Orphan Ministry. You can be a prayer warrior (for free) where you are matched up with a child you can pray for daily. You can give a one time donation. You can give regularly. You can sign up for iGive.com where a portion of the proceeds bought on the internet (from 700 different well known companies) goes to Reese's Rainbow. Also, in a couple of weeks they will start selling ornaments called "Christmas Angel Tree Project").

My heart and thoughts go out to these children. I wish I could provide each of them a home and proper medical care. But for now, I can pray for my little Anastasia (3/31/05) from the AT RISK PAGE. Go take a look- she reminds me sooo much of Sadie. Anastasia has stolen my heart! You can pray for her too.

I was reading Robyn's blog at http://familylovenotes.blogspot.com/ and she commented on how some people have Wordless Wednesday, Sunday notes, etc. She had an idea to have Monday Memories... I love it- and since it is hard to have something note worthy happen in your family everyday... I'm gonna try it!

So, here's one of my favorite Sadie memories. Sadie was very floppy at birth. She had no tone and was like jello. It was difficult to nurse her and I had to carry her like a football because if I held her on my shoulder she would slump down and fall.

When she was 10 weeks old I was in the nursing room with 5 other mothers who gave birth within 6 weeks of Sadie. She was the oldest, smallest and most fragile. I remember trying to get her in a good position to nurse, looking around, and noticing all the strong healthy babies getting a snack. They were cooing, smiling, pulling up their heads- and there was Sadie- floppy, limp and little eye contact. This was probably one of the hardest moments and the moment I realized Sadie would never be the same as other "typical" children. How could she? She was already so many steps behind all these newborns.

It was necessary to me to wake Sadie every few hours for feedings. She had short endurance therefore she ate less more often. All day I thought if only she would smile at me, then I would know she's in there. During her 2 am feeding I remember very clearly I looked down pulled her close to my face and whispered, "I love you Sadie". At that very moment, when I thought I couldn't take it one more day, she smiled. It was the sweetest biggest smile ever. I knew without a doubt that Heavenly Father loved me and loved this sweet little girl he sent to our family.

Sadie hasn't stopped smiling since. She has the sweetest, most beautiful little spirit. It's funny, but it is really hard to see that she is any different than any other child behind that smile.

Saturday, October 11, 2008

Some of my visitors might not be familiar with why I am blogging 31 for 21. As you know Sadie has Down syndrome. It is also called Trisomy 21 or T21 because Down syndrome is caused by an extra chromosome on the 21st gene. Anyway, 31 for 21 is a challenge for people who love someone with ds to blog all 31 days of October to bring Down Syndrome awareness.

So in honor of this I am going to share 21 things I love about Sadie...

1. I love when she says, "I hold you mom"2. I love her little legs and arms and that I have to roll up all her pants and sleeves to fit her.3. I love her beautiful blue eyes and the brushfield spots (a common ds characteristic) that look like someone has splattered white paint in them.4. I love that she has woken me up at four in the morning on more than one occasion to have a "baabaa" and watch "Yo Gabba Gabba, Gabba Gabba Yo, Pleeeeese mommy!"5. I love that when she runs it looks like the only place her body bends in at the waist and she just waddles back and forth.6. I love the freckle on her butt.7. I love that every time a car passes she says, "daddy's home, I'm sooo excited!"8. I love her two sharp crazy front teeth pointing in different directions.9. I love her g-tube scar (because I know her life was spared)10. I love that she knows every Hannah Montana and Jonas Brother Song11. I love that she asks for her "swimmin' boobies" or floaties when she wants to going swimming12. I love her snoring13. I love her little ears that are set lower than typical children14. I love the gap between her toes that spreads so far it looks like her big toe is going the opposite direction of her foot15. I love when she see M&M's she gobbles them so fast no one else can eat any16. I love the way she says, "fellaphant" for elephant17. I love her low husky voice18. I love that every time we go anywhere she thinks she is the princess of a parade and must wave at everyone passing by19. I love that after she says "dtupid" (which she knows is a no no) she will immediately say, "I sowrry mommy"... then turn around and say it again!20. I love her Buddha belly21. I love when she comes up to me says, "mommy wait, wait", signs beautiful, gives me a big kiss, then pats me on the back.

I didn't think much about these... I'm sure I could have thought of better ones... and I'm sure if I did it again I might come up with a totally different list. But this is what I love about Sadie right now. If you look at this list you might think a lot of those are what I love about my typical kid.

I owe you all an excuse for not posting yesterday. I was totally involved in getting Sadie's Buddy Walk website set-up and e-mails send out. It was totally emotionally for me. I can't believe how long it has taken for me to sign-up a team for Sadie.

Her Team name is SADIE'S SUPERCREW... yes, named after her favorite group on last seasons America's Next Dance Crew. She loves that show, loves that group and even flashes the sign while hopping up and down hooting and howling.

So, I sent out a lot of e-mails and I'm very scared that people will not respond or support us. Ever since we've had Sadie- I know people support us and think about us- but I have changed. I have become less involved, more self-centered and I often when someone asks me how I'm doing, I find that I answer them and I forget to ask them in return. I am totally burned out- my house is a wreck, I'm always sick and I just don't have any motivation to do anything except finish the day- loved and alive.

Regardless of how hard life is.. the only thing I would change is bigger bedrooms and closets for the girls and a Maid for me!!! I love my family. Scott is so supportive and kind. He is responsible and charitable. A great husband and father. Kiersten is smart, kind and spiritual. She is gaining confidence everyday and I am thankful for example she provides our family. Madison is talented, independent and confident. She is helpful and always does what she is asked (even if it means it comes with a little free teenage lip service. Hannah is fun-loving, kind, and smart! She is a great big sister and terrific friend. She shows us the value of loving life and enjoying the moment. Sadie is the most beautiful and sweet daughter of God. She is smart, funny, and stubborn. She brings our family together to celebrate when everyone is off in different directions. I love my family and I am grateful for the gifts they bring me.

Thursday, October 9, 2008

I've waited for today for a month. Sue and Frank Buckley joined our parent discussion for our Learning Program. They flew into to work on some projects between DownsEd and The Down Syndrome Foundation of Orange County. Anyway, this is part two to my post "Pets, Mommy, Pets"!

The following are from my notes- Sue Buckley said that when teaching a child with ds how to read:

1. Knowing phonics helps you guess or link the spoken languague with the written language.

2. Phonics is helpful as long as the word is already in your vocabulary.

4. After these steps are followed and your child can identify whole words you can use them to compare and start phonics. ie: they know girl, grape, green by sight but speak the word "go" as "doe".. you can show them the pattern of "g's" and their sound.

Our learning program starts with picture to picture recognition, then word to word, then word to picture. We use matching boards, books, worksheets and words strips. If you are interested in seeing some of the materials you can register for free and download anything you want!! Sadie's picture is on the left bottom corner!!

http://dsfoc.org/

It all made sense when I was there- if you have any questions you can comment and I will try to expand to my best knowledge.

Wednesday, October 8, 2008

Tuesday, October 7, 2008

It seems to me that with all the blogging going on maybe it's time to take a break from reading and take a minute to look at some old pictures! Maybe I can get some comments... considering my words aren't inspiring many of you!! LOL

Summer Swimming- Kiersten, Hannah, Sadie, Katie & Madison

I'll have to find the one Sadie is floating on her back- LOL!!

They were playing "flip your hair"- Sadie did pretty good. Kiersten wouldn't let me show you any of her!!

First Day of School- also the skirt she painted nail polish all over!!

I don't have many "normal" pictures of Hannah- but she always has this beautiful smile!!

I love this one because Madison is always so photogenic (this will be future blackmail material)- this is her trying to be "cool"!!

Kiersten after a 3 day pioneer trek walking and pulling a handcart for over 20 miles- she is dirty!!!!

Monday, October 6, 2008

Life with my Special K's is celebrating her 1 year blogversary today. I can't think of a better site to visit for DS, family, military, parenting, etc. Her little girl Kennedy has fought AML, had major neck surgery and many other set backs. During this time a baby has been born, dad is serving our country and Renee has never stopped caring for her family. This website is full of hope, fun stories and courage!!!

Sunday, October 5, 2008

While watching leaders in our church during General Conference one talk really spoke to me as a mother. Most of this post will be thoughts or quotes from President Thomas S. Monson. He spoke about "finding joy in the journey now" and "adapting to changes in our lives". This is something I have struggled with since Sadie was born. I often find myself to wrapped up in therapies, Dr. appt's, IEP's, and preparing for her future.

He challenged us to "find joy in the journey" because someday "each of us will run out of tomorrows". Also, he told us "don't spend so much time looking ahead and planning for the future that you forget the here and now." I can't tell you how many times I've thought when my house is clean I will be happy. When I've lost more weight I can hang out or go to this place. How many times have I missed out because I was planning for the future??

We should "work today on making memories for the future" and "fill our days with those things we cherish most." After I am done with this I am still going to do several loads of laundry, clean the girls room and fix dinner- but I am going to take a few minutes here and there to hug someone, read a book to a little one, compliment others and maybe write a friend and tell them how much I appreciate them. His last words of counsel..."Shower others with love and gratitude in word and deed". Not only will this help us live in the moment, it will help us build relationships that will strength us in the future.

I challenge each of you to make a goal today that will help you "find joy in the journey!"

Saturday, October 4, 2008

I hate to keep harping on the stubborn side of Sadie; but, it really has started to consume our lives! Last year she lost her snack on two occasions because she decided she didn't want to line up and go in from recess. The first time I was horrified that her teacher could be soooooo mean as to make her sit there and watch all her classmates eat without her. I quickly learned Ms. Katie knows what she is doing and that Sadie would understand there are consequences to actions.

Guess what???? I think Sadie forgot about the "no snack if you don't line up" rule over the summer. We have been in school for 3 1/2 weeks and she has missed snack THREE TIMES already. That's not the worst of it. She has even gone to line up and decided to look Ms. Pam right in the eyes and run off to take another turn at the slide!!!

Also, one day a little boy named Adam didn't like the task they were doing so he decided to throw his book in the middle of the circle. Sadie quickly told him, "No Adam, no throwing!". (This is what they call- "helping classmates keep on task". I call it "being bossy"; nevertheless, it is a new behavior Sadie has acquired this year!) Ms. Pam told Sadie, "I'll help Adam- you go finish your project."

I don't think Sadie liked this to much because she went and got her book, looked Ms. Pam in the eyes, and threw her book in the circle. Can you say stubborn????

I know that this whole 31 for 21 is suppose to be for down syndrome awareness... and I think that means to help others see how wonderful living and caring for a child with ds is. So, know that all of these "behaviors" are exciting, frustrating, interesting, a pain in the butt, but most of all NORMAL 4 YEAR OLD BEHAVIOR!!! And what is more wonderful than looking at your child and seeing beyond the ds?

Friday, October 3, 2008

We were driving down the street right before dusk. It's a beautiful, clear and hot (80 degree) day. Sadie started yelling, "bats, bats, bats mommy". I was a little confused until I looked in the rear view mirror and noticed she was pointing at the seagulls flying around. I asked her, "are you pointing at the birds?"

"No mommy, bats in the sky. That's aweeeeesome!!"

I wonder what they are teaching her at school right now???

Halloween is coming toooo soon and I asked each kid to decide what they wanted to dress as for Halloween by Oct. 1st. No more last minute costumes (Kiersten) and no more changing at the last minute (Hannah). My only problem is I haven't been able to talk Sadie into something cute.... she wants to be "MUNO" from Yo GabbaGabba. As many of you know- we love Yo GabbaGabba- but, Muno looks like a giant boy part!!! I am horrified- can't she just be a ladybug or Minnie Mouse??????

Thursday, October 2, 2008

Let me give you a little background on this story... although I am really enjoying the freedom public school brings to me as a mom- I am a homeschooler at heart. With that in mind I can not count the hours I have spent teaching my children phonics. I have more than a dozen books for each grade on the subject.

So, when I was in our learning program at the Down Syndrome Association of Orange County last month and heard that "our children just don't do well with phonics. It is best to teach whole language"- I just about freaked!!! I've heard this before, but I haven't really thought about it because Sadie was so far from reading. Well, we are getting ready for Kindergarten and pre-reading is a skill we've been working on.

I knew if I was ever going to get on board with this philosophy I needed to understand the reasoning behind it. They explained that because of the hearing and articulation problems our children most likely have it makes it difficult to really work with phonics. OK... that sounds understandable. I'll try whole words; but, I'm not giving up on phonics!

This month we worked on word to word matching. We have two boards with six words each- Foods and Pets. We also have a book that has a title page just with the word and the following pages have a picture and corresponding word. At the end of each book there is a vocabulary or word building page with all the words listed without pictures.

Let me just testify to you right now- IT WORKS! Sadie was able to match word to word successfully (except a few times when she matched dog and frog- most likely looking only at the ending of the word). She was able to read the books and even sight read a few of the words without pictures in the back of the book. But, here is the real test...

The other day while in a parking lot I heard Sadie repeatedly telling me, "Pets, mommy pets. Pets, pets mommy!" After a few times of hearing her chant this I looked back and noticed her pointing. She was pointing at the Pet City sign. What???? Yes, I have taken her in there and there were pictures of animals on the windows. But, she wasn't pointing at the windows and I never say, "let's go to the pet store". I do say let's go see the animals, dogs, cats, get bunny food, etc. Never Pet Store. I think "Pet" is just a weird and formal word.

Sadie saw the word and recognized it as the word she read in her book. She read a whole word. Could I have taught her phonics to read it... yes, it would take awhile but yes. Do I think phonics are important? YES, YES, YES! Did this experience make both Sadie and I excited to work on reading... YES, YES, YES!!

Just a cute P.S. to this story. Sadie knew how excited and proud we were of her when she read "Pets"-- so the other day she took my hand and lead me to her teacher and said, "Pets, mommy, pets". She wanted me to tell Ms. Katie and Ms. Pam! Good job Sadie!

Wednesday, October 1, 2008

Today is the first day of blogging of 31 days for awareness for Trisomy 21 (or ds). I don't have much time and I can't make this life consuming- so I thought I would start with a quick story.

Today, while sitting at the computer Sadie decided she would paint her nails bright green. She was able to unscrew the bottle and paint her nails, hands, legs, and skirt. Before daddy could see what she was up to, she went into the bathroom and unscrewed the nailpolish remover- splashed a little on her hair and clothes, then turned on the water to wash down a little.

After cleaning herself up a bit, she walked to daddy and said, "I'm wet!". Needless to say, we aren't sure if we are more scared that she was able to get into all these toxic things... or proud that she was able to problem solve all by herself.

Don't worry... all toxic chemicals are now in the top cupboard away from little Sadie!!!!!!

Followers

Sadie

Hannah

Madison

Kiersten

About Me

"Well, after this I should think nothing of falling down stairs"- Alice
I am the wife to my eternal companion and best friend of 21 years and a proud mommy to four girls.
Kiersten- 18yrs.
Madison- 16yrs.
Hannah- 13yrs. &
Sadie- 7yrs. (born with something extra special)

Blogs I Love To Follow

The Creed of Babies with Down SyndromeMy face may be differentBut my feelings the sameI laugh and I cryAnd I take pride in my gainsI was sent here among youTo teach you to loveAs God in the heavensLooks down from aboveTo Him I'm no differentHis love knows no boundsIt's those here among youIn cities and townsThat judge me by standardsThat man has impartedBut this family I've chosenWill help me get startedFor I'm one of the childrenSo special and fewThat came here to learnThe same lessons as youThat love is acceptanceIt must come from the heartWe all have the same purposeThough not the same startThe Lord gave me lifeTo live and embraceAnd I'll do it as you doBut at my own pace

I'm just a mom of four crazy girls searching for my SANITY in midst of teenagers, down syndrome, taxi driving, laundry, and church callings!

Please feel free to leave comments... they encourage me to write more often :)